Sunday, August 3, 2008

The mutant revolution continues.

If you haven't heard, there's been a revolution.  It's old news now, and almost silly to bring up again for those of us that have been following it but I've had sort of an interesting series of thoughts relating to it.  Essentially, a large group of cystics left a for-profit site after a series of incredibly offensive and insensitive actions made by the administrators.  You would think that a site for patients with cystic fibrosis would be run with their best interest in mind and possibly even run by a person with CF but it is not.  About a decade ago, Medrise purchased somewhere around 120 website URLs containing the names of specific conditions and diseases.  On these URLs they built what have been disguised for a time as safe haven communities for those dealing with these ailments as well as family members and loved ones.  These sites are sponsored by various pharmaceutical companies who are allowed to poll the site and send out emails to users relating to their products.  The Medrise sites are for profit.  

I was talking to a few of the other mutants tonight and Sandy brought something huge to my attention.  Medrise bought and many other sites for profit.  Essentially, they have bought what we live with every day for profit.  They've bought our disease to make a buck.  To act like it is a nurturing community is a joke.  They have walked on many of us, acting as if their site is better off without our brilliance, our experience, our tenacity.

While there are many users who have defected like myself, there are many users who have chosen to remain a part of their site.  Many of these people are also using a forum that the mutants have gone to.  Let me just say that while I can't control the Internet usage of people, I find it insulting that some of these people are having their cake and eating it too.  Each time you visit their site you leave a footprint that encourages sponsors to give them more money.  Many of the people remaining on the site are mothers of children with CF, spouses and a few individual cystics who have specific loyalties with the owners of the site.  The parents of are important, spouses even more so, but they can never really know what it's like to be a mutant.  

I'm over the situation but to think that these people have purchased my disease is sickening.  They've bought it, they own it, and they don't even get to live with the dirty grit of it.  Somehow they don't even deserve to be cystics.  

Because we cystics...  let me tell you.  We know something other people will never know.  We have secrets about life that the people of don't deserve.  I wouldn't wish rotten lungs and pancreas on those people any day.  Because they simply don't have the strength to handle it.  


Amy said...


Shannon said...

Melanie, I got your blg addy off the cf2 site and have read through your blogs. I really like your style. The last paragraph in this post was amazing! and I completely agree with you.


Lisa said...

I am one of the ousted--but a spouse. I just read through some of your entries after you posted it on Love it!


Tina said...

I'm a spouse and I too have been exiled. I ranted a particularly eloquent rant re: their entire "for-profit" motivation and how it was an insult and disrespectful to every Cf'er, that this was censorship in it's most harmful for. I announced I was going to copy my blogs and move to blogspot. The following morning my blog and every other trace of me was erased. Of course that just proved my point. F'em see you in chat...tinabanina